AVMs of the Cerebellum

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AVMs of the Cerebellum

Self-explanatory. I would like to see more groups created in this fashion- organizing members by the locations of their malformations. Everything else seems to branch off from those..

Members: 55
Latest Activity: on Sunday

Discussion Forum

Aneurism and AVM repair

Started by Howard. Last reply by Lulu Feb 24. 1 Reply

Hi, I had flu like symptoms for three days. Found I had very high blood pressure and went to the ER. I was told that I had had a stroke. I apparently had an aneurism and an AVM, both in my…Continue

Getting Groceries

Started by multistats. Last reply by Ameenah Jan 22. 4 Replies

When I was in the grocery store earlier today, I remembered the problems grocery stores provided. This problem was true of stores in general, but was particularly true of grocery stores. Those of us…Continue

Tags: grocery, stores, up, throwing, dizziness

CCAS--Cerebellar Cognitive Affective Syndrome

Started by Nicole R. Last reply by WenWen Oct 18, 2013. 9 Replies

Hi everyone,I wanted to get the word out about something I just heard about and that I haven't seen mentioned on this website before--Cerebellar Cognitive Affective Syndrome.I recently talked to…Continue

Tags: cerebellum

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Comment by Silvia on March 7, 2014 at 11:21pm

Update on my son Roy
He is still at Children's hospital in Oakland, he is due to be discharged, still breathing with a vent. They stopped weaning him off he vent. He doesn't move much when we ask him to, but his OT therapist said she got him to open his left hand. His spasticity is better with the help of some splints on for two hours off for 1 hour. His vomiting is not as bad anymore, he is on a 20 hour continuous feeds. He is not being accepted for rehab, im looking for a place that will give him Hyperbaric therapy. So far all places need him to be weaned off the vent. Im feeling lost and helpless for my son. I keep trying to find him help, but so far still looking. His kidney stones are still there and the doctors say it is not causing him discomfort? Im very sad today because it has been 6 months and my son has not seen the sunlight or breathed fresh air. I miss my son so much. He does turn his head and turns away when he doesn't want oral care done or suctioning. He bites down, he moves his body when being turned and sometimes lift his upper body and head. He cant speak, but yesterday they tried the speaking valve with the speech therapist and I was told he tolerated it well. Still waiting for my son to have a recovery 6 months now.

Comment by Ann Ning Learning How on March 7, 2014 at 3:53pm

Hi, Mollybaby - That's a HUGE deal that you're seeing your husband try to modify his behavior and be successful! I describe myself as "saltier than I used to let on" - so I've always been like this, I just lack the social filtering skills to control it like I used to. Thankfully it doesn't get me into too much trouble. I like to say I'm more fun to be around now. But it's a very hopeful thing to hear about someone who knows about certain issues and can exert himself enough to keep things under wraps. Yay him! I'm going to file that info away for future reference :)


Moderator
Comment by Susan T. on March 7, 2014 at 1:46pm

Hi mollybaby, Thank you for posting your comment. My 1st AVM bled in May of 2011 and then my 2nd AVM was discovered during an angiogram on 10/31/12. The 2nd AVM was radiated in July 2013 and hopefully it will be obliterated by July 2015. Both AVM's are in my cerebellum and I was told by my neurologist that mostly my balance and coordination would be affected but I had cognitive problems plus I had taste and smell issues so I'm glad you mentioned your husband's challenges. Please know that I'm approaching my 3 year anniversary of my 1st AVM burst and I continue to slowly improve so I'm hopeful your huband will also continue to recover. God bless you for your support of him and again I'm happy to read your comment!

Comment by mollybaby on March 7, 2014 at 1:08pm

I am so happy to have found this group! My husband had a bleed from a cerebellar AVM in November 2012. He had a craniotomy, two embolizations and a gamma knife (linear accelerator) treatment since then. His AVM was on the right side of his cerebellum. He can walk unassisted now without moving his head from side to side. He is still dysarthric, but intelligible, and cognitively very intact. I'm a speech therapist, so we work on increasing speed and clarity every day with exercises, reading out loud and talking on the phone. It's just been amazing reading all the posts and seeing so many similar experiences: weight loss due to food tastes changing, how difficult grocery stores are, the fatigue, ataxia... The worst part for me was the personality change that seemed to occur - a lack of engagement, empathy, very irritable and quick to explode no matter where we were - which was completely different from his pre-stroke personality. I had always believed that the cerebellum only controls motor coordination and balance, but it's evidently more complicated than that. As the coordination and stamina began to improve, I worried that the personality changes would be permanent. It felt like this man I had known for 30 years was someone else entirely. But the old personality is coming back. Little by little he is becoming aware of it and working to change it. It's been quite a journey and such a bolt of lightning change in our lives. It's nice to find a group who knows this road.


Moderator
Comment by dancermom on February 28, 2014 at 7:53am

How is he alertness-wise, Silvia? Can you see progress? Thank you for updating us -- we so much want him to recover.

Comment by Silvia on February 28, 2014 at 3:01am

Just want to post update on my son Roy, His AVM was in the cerebellum and the bleed caused damage in his brain stem, pons, thalamus, right cerebellum,.
He currently is back on a vent even though he went over a month off. He has developed kidney stones too. He is responding more now that we have him back on amantadine, currently he is not qualified for rehab, no doctor will step out of the box, So I will start alone. I have him on a list for acupuncture treatments once he is discharged in the next couple of weeks and will try hyperbaric therapy also.


Moderator
Comment by Susan T. on February 6, 2014 at 11:15am

Hi again, Lulu and thanks for the reply. Yes, I am well and glad to hear you are "good." After reading your comment, you might enjoy this. One day after my brain injury, I was climbing the stairs and my son, who was about 23, was behind me. I apologized to him for my slowness and he replied ... oh, mom you've always been slow. So, I said well yes I had an undiagnosed birth defect so hence my slowness.
Thanks for the comments about the need to revise your shunts. At the beginning, I asked the neurologist how I would know if there was a problem with the shunt, and he just said that I would definitely know. I'm also glad you mentioned ear infections after a cold for I caught a virus once after my injury and the dizzying effect frightened me so I've been concerned about catching a cold. However, I've been feeling stronger now as I approach my 3 year anniversary and I'm hoping my body will handle illness better.

Comment by Lulu on February 6, 2014 at 10:39am

Hi Susan. I'm good thanks. Hope you are too Its great to find someone else who suffers both conditions as I think it is very rare. My AVM hasn't caused me too many problems so far and is untreated. My sense of balance isn't great and I have always been pretty 'clumsy'. But apart from that... My only ops so far have been for the Hydrocephalus side of things. I had my first shunt at 14 and it has been revised 4 times now when it has blocked. The first couple of times I started getting headaches again which alerted me. The other times my only symptom has been both my ears blocking up followed eventually by a general feeling of illness and loss of balance. I'm prone to ear infections (causing a feeling of blocked-up-ness) after colds and find it very worrying every time.


Moderator
Comment by Susan T. on February 6, 2014 at 8:51am

Hi Lulu, how are you? I have 2 AVM's in my cerebellum and the 1st one burst in May of 2011. Due to hydrocephalus, a shunt was installed after the burst and I thank God that so far I have not had any problems with the shunt.

Comment by Lulu on February 6, 2014 at 7:59am

Does anyone else in this group have a Cerebellar AVM and suffer from Hydrocephalus?

 
 
 

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Walking Again

Posted by John P. on March 18, 2014 at 8:00am 2 Comments

My craniotomy to remove my AVM was early in the first month of the year, but at first I could not walk at all and

many who had the same operation I am sure had the same

problem. After two months in the hospital I was able to

use a…

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